I bet you've probably never heard of Diabulimia, you probably don't even know what it is. Let me give you the Google definition that comes up when you enter the term into the search bar: "Diabulimia (a portmanteau of diabetes and bulimia) refers to an eating disorder in which people with Type 1 Diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. Diabulimia is not currently recognised as a formal diagnosis by the medical or psychiatric communities" It has a Wikipedia page though, and it affects 40% of people with Type 1 Diabetes, and people have died and are dying from it.
I was privileged enough to attend the Diabetes UK Professional Conference last week, and one of the sessions was on "Practical approaches to managing disordered eating and eating disorders" facilitated by Jacqueline Allan, who is currently doing a PHD on the subject at Birkbeck, University of London, Jane Morris and Jenny Singer. Such an important topic, something that really needs to be talked about. One of the first questions posed to the audience was if any of them knew what Diabulimia is, a good amount of HCP's in the room put up their hands, nodding their heads, yeah they had an idea...and that response sparked half "Well done for knowing what it is!" and half "Well where are the HCP's who DON'T know what it is and need to learn about it?" The room had a significant number of people in it though, which is good, any number of people listening and learning is good. However, Jacqueline's frustration, as a person who has been through it herself, was clear. And rightly so!
A conversation that some of us were having amongst ourselves before the session started was, do diabetics in general eat "normally"? And the general consensus was not really. Scanning the backs of packets for nutritional information, weighing our food etc. isn't "normal" and from the moment of being diagnosed we're taught to essentially have almost an "obsession" over everything we put into our bodies. Every time we eat there are questions flurrying around our minds "How many carbs are in this?" "Should I be eating this?" "Where is the packet I need to see it"...we do not eat like everyone else, we have it built into us that we need to see the nutritional information on everything we eat, and for some this goes right over their heads, but for others this is detrimental in a way that may not be so clear straight away. Jane Morris also touched on this, and as a Psychiatrist who has published in the field of eating disorders she said she would never dream of having a recovering anorexic look at the nutritional information on the food they're eating but for diabetics this is unavoidable.
As I said in the beginning of this blog post, Diabulimia affects a staggering 40% of those with Type 1 Diabetes- "Disordered eating behaviours are more prevalent in adolescents with Type 1 Diabetes" As well as being surrounded with the nutritional information in our food, we are also surrounded with constant measurements...notably our weight. Every clinic appointment starts off with "Hop on the scales" What if I don't want to step on the scales?!...Do it anyway, all in the name of medicine! Our weight is scribbled down on a piece of paper every single appointment, for the consultant to see, but even worse, for you to see. However, our weight is a significant point that consultants should be paying attention to, and if they knew more about Diabulimia they may be able to spot warning signs in a person's weight at clinic; "The most frequently cited reasons for deliberate insulin omission is weight loss" and if a consultant isn't tuned into this then it becomes easy to hide. There is an array of excuses one could come up with other than wanting to lose weight. If HCP's noticed a rise in HbA1c and a decline in weight, and knew what Diabulimia is, then bingo! However, HCP's do not know enough.
It's a very well known fact that no insulin, leads to ketones and in turn becomes Diabetic ketoacidosis. From Kris' blog, (https://medium.com/@k_d85/thinking-about-dka-887e73aa9c10#.q8at8dhjk) I found data values surrounding admissions to hospital with Diabetic ketoacidosis, about 44% are due to infection, then there is pump malfunction, alcohol etc. and then there are those who's diagnosis of Type 1 comes from presenting to hospital in DKA.
19% of cases are considered due to "Non-compliance" if you are a HCP and you use the words "Non-compliance" to describe a person with Type 1 Diabetes then what are you even doing? Just stop. One of my tweets that generated 33 likes and 20 retweets was this: "HCP's need to stop using the word non-compliant, because uncontrolled diabetes is almost always a deeper set problem" And it links in to the session that addressed managing admissions with Diabetic ketoacidosis and recognising that repeated admissions with Diabetic ketoacidosis are not "Non-compliance" but are in fact a psychological problem that needs to be addressed and there is a very high chance that Diabulimia falls into this.
The mortality rate for diabetes as a disease in itself is 2.2/1000, the mortality rate for people with both Type 1 Diabetes and an Eating Disorder is 34.6/1000. Look at those figures for comparison, but also look at them and realise just how much of a problem it is. People die from Diabulimia, it's not something to be brushed off, and it leads us to question over and over again WHY is this not recognised...we can figure out the facts and figures and chuck out data values left right and centre that leave people shocked, yet it is still not officially recognised by the medical and psychiatric communities? Of course, it's probably a bit of a taboo subject, who wants to hear about a Type 1 Diabetic purposely not taking insulin? When we are taught that insulin is our lifeline? What preposterous behaviour, who wants to hear that? It makes people feel uncomfortable, that someone would do "the unthinkable" and stop taking insulin. Well guess what? It happens.And there are so many people out there in such a dark place, who feel so uncomfortable in their own skin that they would risk their lives to be thinner.
It is a tragic situation that 40% of people with Type 1 Diabetes find themselves in.
Talk about it. We NEED to talk about Diabulimia. Health Care Professionals need to know what it is, and if they do know what it is then provide them the tools and the education to be able to approach the subject. A consultant is the first line for a Type 1 Diabetic and the problems they might encounter, and they need to be clued up on every aspect of a life with Type 1 Diabetes, and even some of those struggling with Diabulimia do not know the name of it themselves, and probably will never bring it up themselves at an appointment either. Diabulimia ins't rare, Diabulimia isn't a "small percentage" it's 40%, that's nearly half of all people living with Type 1 Diabetes. Now tell me that Diabulimia is something that can be ignored.